From Tech Solutionism to Tech Success: Debugging Tech and Pain

Background Mural by @Felipepantone for B_line in Chicago.

Tech companies who recognize the prospects want to engage in the “pain market.” Relying on the creativity and novelty of a company’s offering, and pulling in a psychologist and physician, while a good start, isn’t enough. When it comes to opportunities for tech to “solve the problem” of pain, how the pain problem is defined can be the first mis-step. It’s popular to articulate this need as it relates to cost. It is less common, but more important, to explain the problem of pain as it relates to suffering, and solving for that. Better understanding of this connection is what promotes improved outcomes and the more efficacious care provision that is sought after. It will lead to a product that stands out amongst the competition.

Knowledge translation isn’t equivalent to being current with research. It is the understanding of the nuances and pitfalls that arise with application of knowledge. This is why including patients and active clinicians on the development team is valuable. In a qualitative review of function and usability of apps aimed at chronic pain support, it was found that less than a third of pain management apps involved clinicians in development and less than a fifth included patients (and then only as ad hoc).¹ The authors highlight other limitations as well. None of the apps examined in this study offered information sharing with practitioners. While there are some standouts who do currently provide the opportunity for users to share reporting, it is not widespread. Ecological momentary assessments can reveal far more clarity about a person’s pain experience compared to having to recall during a clinical encounter.² Worryingly, none of the apps assessed were HIPAA compliant. And many products I’ve reviewed don’t communicate how user’s data will be used. Additionally, almost no apps satisfied the reviewers standards for evidenced based content. Nor did they include brief pain questionnaires or inventories. I emphasize “brief” here because the quantity and length of questionnaires that pain clinics require patients to fill out is often daunting. Shorter validated versions exist for quite a few. Some are only a few items in length. These can add significant value for the person in pain, their practitioners, and gives you data to better understand your own tech to continue to improve upon it. Only two of the apps could accommodate reporting of simultaneous body regions, different intensity levels or quality of pain for the single diary entry. Persistent pain is not this basic. It is common for someone who experiences persistent pain to endorse multiple body regions with different descriptors and intensities. These are the types of oversights that occur when clinicians and patients are not robustly included in development at an early stage.

Usability problems carry forward in the iterative process when user assessments aren’t deployed early. Part of the challenge with an early UX person involved with design and development, but not jointly with clinicians and patients to partner with them, is that the UX person may not have the depth of understanding that a patient and clinician have. A person who is hurting has different usability needs than someone who is not. Pain can make focus challenging, dexterity painful, and impact a multitude of other usability related features. Some individuals that you anticipate being future users of your tech may require other adaptations. Waiting until you think your tech is “ready” to bring in these subject experts, sets yourself up for expending more energy on redesign later. As a physical therapist, my experience colors my view here. Rehabilitation professionals are adept at anticipating usability issues based on an individual’s impairments. Watching a person’s usage, movement, response, and subsequent modification, is intrinsic to my role as a physical therapist.

Your tech is only as good as a person’s access to it. Requiring ownership of a particular tech as point of access risks perpetuating existing disparities in healthcare.^3,4 Does your app or tech require data usage, wifi or broadband, a personal computer? Do the people you are aiming to help have access to a clinic who can afford the digital therapeutic hardware needed for use?⁵ Looking at smartphone ownership necessary for app usage, worldwide, the five most populated countries have a combined average of 60.14% ownership with over 80% (US), 35.4% (India), China, Indonesia, and Brazil hovering in the mid-50s to mid-60s.³ In the US, CDC data from 2018 estimated that 39% of individuals with chronic pain and 51% of individuals with high impact chronic pain, have incomes ≤ to 200% of federally defined poverty levels.⁶ For reference, 200% poverty level in the US for a couple, is $36,620/year. And for a family of four, it is $55,500/year. Some Medicaid payors here in the US provide phones to aide in healthcare related scheduling of medical appointments and transportation. These phones are often basic with limited data and minutes. Therefore, many people will have multiple phones and may utilize contract-less service providers. Conversely, many may utilize a smart phone as their primary means of accessing internet via free wifi due to not having a home computer or broadband internet. According to the Pew Research Center, in the US, 85% of adults are smart phones users.⁷ This decreases to 80% in rural communities. And reduces further to 75% for individuals with a high school diploma or did not finish high school. Individuals over 65 have a 61% adoption rate of smart phones but make up 30.8% of adults with chronic pain and 11.8% of those who experience high impact chronic pain.⁸ There are two sides to this coin. While smartphone as point of access may leave out important numbers of people, there is more relative access to smartphones than other digital therapeutics utilized for pain. There is significant underutilization of the capabilities of these devices that could bridge availability of tech often found only in research or specialized clinical settings.

“If pain is not expressed, it has no reality”⁹ Digitial health tracking offers patients an opportunity “to be heard” and encourages greater disclosure. This can facilitate more information to be shared allowing for better understanding of a person's pain experience. People with persistent pain are not a monolith. Cultural and linguistic differences in pain expression and suffering vary. There is massive opportunity for tech to develop better means of reporting pain than a 0-10 scale. Non-linear, individualized, user defined anchors, imagery (and much more) could help people express pain more fully. And critically, how they feel it is impacting their ability to engage in meaningful tasks. All of which could be codified once communicated in a unifying way. An increase in reporting frequency by users may reflect a greater NEED to be heard, perhaps reflecting an increase in suffering or a reduction in ability to manage the current pain being experienced.² This is an opportunity to help them to connect with care providers. Ideally ones they already have familiarity with and hopefully with whom they experience a trusting relationship. EMRs do not codify self-report data collected outside of the clinical encounter. But that doesn’t mean the information can’t be inputted if an app presents it in a compatible way. This can allow for a more developed picture for practitioners and facilitate communication between patients and their providers.

If your tech requires a wearable component, how adaptable is the fit? I’ll use a VR headset as an example. Can it accommodate a variety of hairstyles? Will it stay in place if a person is wearing a hijab or bonnet? Could the weight of it pull those off? This is an area where the opportunity to NOT perpetuate existing health disparities, matters. If a person does not feel comfortable engaging with your tech, they obviously won’t. The concern is not just physical comfortable, but social and emotional comfort as well.

How do you articulate your value? The profitability of your tech comes from large scale use which means you’ll be courting organizations. If you believe your tech offers a solution, whose problem are you solving for? Are you focused on the payor’s concerns? These may be different than the end user’s concerns? You need to effectively speak to both audiences. Let’s examine the most common scenario I come across. People who hurt want to not hurt and get back to living their lives. Organizations who serve these individuals want to provide good care, and keep costs down. Someone in need of support, medical or otherwise, doesn’t want to be thought of as a number on the bottom line. I’ve read plenty of cringeworthy copy on sites which market their tech as an alternative to medication. It can come across as an effort to deny needed care. It’s shaming to the person who relies on medication to function. Using a shame tactic with the goal to encourage a health-related behavior can to lead long lasting negative feelings about it.¹⁰ This is the opposite of promoting optimism for relief, self-efficacy, and joy, all the things you should want your tech to bring to mind. Are there people who wish to reduce their medication intake who may be drawn to this line of marketing, absolutely. But there will be just as many who feel alienated by it. Speaking to all the customers (health organizations, insurers, and range of people who hurt) simultaneously is possible. Conscientious language choice can speak to the evidence-based outcomes that your tech may have an impact on.

Engagement data informs us that use typically wanes after two to six months.¹¹ Many tech companies accept this hamster wheel of sustainability. It is worth aiming for longer durations of user engagement. Opportunities exist to evolve with the person in pain. And not just by churning out good content. How do they feel about your tech when using it? What is the first question a person is asked to consider or decide upon with each engagement? When they leave the encounter, do they look forward to the next one? Because it is not about a number on a pain scale. It is about relevance to their life and fulfillment of their identities and values. It is within that context that we address suffering.

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References

1.     Zhao, P., Yoo, I., Lancey, R. et al. Mobile applications for pain management: an app analysis for clinical usage. BMC Med Inform Decis Mak 19, 106 (2019).

2.     Galve Villa, M., S Palsson, T., Cid Royo, A., R Bjarkam, C., & Boudreau, S. A. (2020). Digital pain mapping and tracking in patients with chronic pain: Longitudinal Study. Journal of Medical Internet Research, 22(10).

3.     Bommakanti, K.K., Smith, L.L., Liu, L. et al. Requiring smartphone ownership for mHealth interventions: who could be left out?. BMC Public Health 20, 81 (2020).

4.     Yao R, Zhang W, Evans R, Cao G, Rui T, Shen L. Inequities in Healthcare Services Caused by the Adoption of Digital Health Technologies: A Scoping Review. Journal of Medical Internet Research. 24/02/2022:34144

5.     Sarkar U, Lee J, Nguyen K, Lisker S, Lyles C. Barriers and Facilitators to the Implementation of Virtual Reality as a Pain Management Modality in Academic, Community, and Safety-Net Settings: Qualitative Analysis. J Med Internet Res 2021;23(9):e26623

6.     Dahlhamer J, Lucas J, Zelaya, C, et al. Prevalence of Chronic Pain and High-Impact Chronic Pain Among Adults — United States, 2016. MMWR Morb Mortal Wkly Rep 2018;67:1001–1006.

7.     Pew Research Center, June 2021, “Mobile Technology and Home Broadband 2021”

8.     Zelaya CE, Dahlhamer JM, Lucas JW, Connor EM. Chronic pain and high-impact chronic pain among U.S. adults, 2019. NCHS Data Brief, no 390. Hyattsville, MD: National Center for Health Statistics. 2020.

9.     Becker KL. Cyberhugs: creating a voice for chronic pain sufferers through technology. Cyberpsychol Behav Soc Netw. 2013 Feb;16(2):123-6. 

10. Harris CR, Darby RS. Shame in Physician–Patient Interactions: Patient Perspectives. Basic Appl Soc Psychol. 2009;31(4):325-334.

11. Jonassaint CR, Kang C, Abrams DM, et al. Understanding patterns and correlates of daily pain using the Sickle cell disease Mobile Application to Record Symptoms via Technology (SMART). Br J Haematol. 2018;183(2):306-308.

©2022 DevraJoy LLC. All rights reserved.

Fear Avoidance Part III: Moving beyond the model

In part 1 and 2 of this series (read them here & here) I discuss the problematic application of the fear avoidance model and the relationships the model proposes that lead to disability. In this last installment, I will expand on where we should focus our efforts. Perpetuating the assumptions in the model runs the risk of misdirecting clinical treatment. Studies examining interventions, based on the presumed relationships within the model, have tended to be underpowered and suffer from design flaws. It is suggested that future research look at characteristics of subgroups, when assessing interventions to better identify what intervention may benefit whom and when.

Dr. Pincus and her co-authors in 2010 reviewed limitations within the evidence and offered guidance on what an expansion of the model might look like. The methodology of how fear-based beliefs and pain has been studied raises concerns of ecological validity when you consider studies performed in healthy populations and the differing features of spontaneous pain versus clinically-afflicted pain and the Hawthorne effect of behaving differently when being watched. Work seeking to validate the model via cross-sectional studies has not shown the same results as those that employ prospective designs. In other words, looking at relationships in a single point in time, is not the same as looking at causal inferences over time.

They go on to note that appreciating fear as being unconnected from avoidance and identifying treatment response to subsets of fear (fear of pain, movement, injury, exercise, and activity) may be helpful. Also, they point out that it is important to distinguish between beliefs about avoidance versus actual fear-based avoidance. Current outcome measures don’t differentiate between these fully. We do not have the evidence to substantiate the claim that simply holding the belief “I must lift with a straight back" will lead to persistent pain.

She suggests two expanded models termed “the social pathway model” and the “depression pathway model”. However, neither extend to include self-efficacy as a path to recovery despite wide evidence of such. She identifies exploring narratives to better understand how a person came to possess their views of fear and avoidance as a necessary step to recovery.

Crombez et al discuss “disengagement” from what they term “unrealistic goals” What is an unrealistic goal? Is it unrealistic forever, or for now? How do clinicians manage this? “I don’t think this is a realistic goal” may be code for “I don’t believe in you.” Which is different from “This is a great goal, let’s look at breaking it down and see what steps to focus on right now as we pursue it.” Our perception of what successful goal attainment looks like may not match what their expectation of successful goal attainment is. Perhaps they are ecstatic with partial engagement when I was imagining full participation. They raise the question that it is perhaps not beliefs of hurt=harm that are integral to the model, but instead a belief that pain must be mitigated for return to valued tasks to occur. I can’t emphasize this enough. This opens the very important door of living well in-spite of pain and using self-management strategies to facilitate engagement with valued tasks, while on the path to seeking total abolishment of pain. This should be added to the schema.

Often “pain education” is promoted as a path to reduce fear and catastrophic thinking. First, the evidence of that is questionable (see my discussion on this here). PIncus et al 2010 also noted in their review that graded exposure to the feared movement only changed that specific activity. It did not lead to broader participation in other activities. They describe it as the “‘exception to the rule’…that one activity is not dangerous but other activities are.” As noted in the previous blog in this series (read it here), self-efficacy is a mediator and predictor of better function in the presence of fear of movement. It empowers the individual to generalize strategies to other encounters. If other factors mediate and moderate the relationship, we should be focusing on those.

The fear avoidance model in it’s evolved form isn’t enough. It continues to focus on the creation of fear based beliefs and avoidance behaviors. It perpetuates the relationships of the factors in ways the evidence has not supported when viewed prospectively. This emphasis directs attention to the development of pain states as reflexive. Without subgroup consideration, this is misleading. It implies that this pathway to pain persistence is the same throughout the continuum, and identifies the correlations as reflexive, and allows no path for interruption. I believe leaving self-efficacy out of the model is a critical error. I suggest clinically we focus a bit less on the pathway of creation, beyond encouraging and reassuring early movement. After that, our focus should be on self-efficacy. The question that should be primarily guiding us isn’t “are they kinesphobic?” The question we should seek to understand is “do they feel that they have the tools and strategies to successfully manage their pain to engage with the word, the way they want to.”

Costa, L. da C. M., Maherl, C. G., McAuleyl, J. H., Hancockl, M. J., & Smeetsl, R. J. E. M. (2011). Self-efficacy is more important than fear of movement in mediating the relationship between pain and disability in chronic low back pain. European Journal of Pain, 15(2), 213–219.  

Crombez G, Eccleston C, Van Damme S, Vlaeyen JWS, Karoly P. Fear- avoidance model of chronic pain: the next generation. Clin J Pain 2012; 28:475–83.

Lee, H., Hübscher, M., Moseley, G. L., Kamper, S. J., Traeger, A. C., Mansell, G., & Mcauley, J. H. (2015). How does pain lead to disability? A systematic review and meta-analysis of mediation studies in people with back and neck pain. Pain, 1.

MJ,SullivanMJL,HaythornthwaiteJA,EdwardsRR. Rethinking the fear avoidance model: toward a multidimensional framework of pain-related disability. PAIN 2013;154:2262–5.      

Pincus, T., Smeets, R., Simmonds, M. and Sullivan, M., 2010. The Fear Avoidance Model Disentangled: Improving the Clinical Utility of the Fear Avoidance Model. The Clinical Journal of Pain, 26(9), pp.739-746.

Pincus, T., Vogel, S., Burton, A., Santos, R. and Field, A., 2006. Fear avoidance and prognosis in back pain: A systematic review and synthesis of current evidence. Arthritis & Rheumatism, 54(12), pp.3999-4010.

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